Wednesday, May 04, 2011

The cloud of the future

Today Gabriel had an appointment with the nurse practitioner to recheck his diabetes medication and glucose levels.  The clinic is in the same location as his mental health provider, and, as we sat in the waiting room, his case manager came in.  She came over to Gabriel and began asking him if he brought his record of blood sugar levels, did he bring a list of his medications, etc.  She had to take care of another matter, but she told him she would be back.

I knew that she planned on going back with us when the nurse called him.  Unexpectedly, I felt a wave of resentment rising within me, and it took me by surprise.  After all, isn't this what we moved up here for:  to obtain the support services that Gabriel needs?  Why did I have this almost visceral response?  As I thought about it, a dark cloud seemed to skim across my mind.  In those few dark moments, I saw a future without me, Gabriel on his own against the world and his schizophrenia.  That vision was so vivid, so distressing, that I had an unsettled feeling during the rest of the appointment.

This is the worry, the sometimes anguished distress, that haunts parents of children with developmental disabilities or severe mental illness...what will happen to my son/daughter when I'm gone?  We search for programs and support services, we consider residential options, we draw up wills and set up trusts.  But, especially if our family is not a close-knit one, we fear that eventually our adult child will be "cared for" only by people who are paid to be there.